I have trigeminal neuropathy (not neuralgia) which has totally changed my life. Until my dr. put me on Cymbalta, the burning pain in my upper back teeth was intolerable. The only thing which helped was Vicodan. I have to work and am fortunate it doesn't put me to sleep but not something I want to use everyday.
This discussion is for others like me to give emotional support to each other and/or share what has helped or not helped others.
Hi,
I was wandering if you have ever consulted with a neurosurgen concerning your problem. I have severe Spastic Cerebral Palsy, am 49. I also have an ITB Pump, made by Medtronic. My neurosurgeon did my surgery for my pump implant and also for my Cervical fusion. I know he has treated others with Trigeminal Neuropathy successfuly with surgery.
Best Wishes,
Pat :)
Hi Pat,
I know EXACTLY what you're going through. I had trigeminal NEURALGIA...in my teeth and I have poly neuropathy all over my body...it's headed into my autonomic system now. Have you seen a neuro that specializes in trigeminal disorders???? There is a GREAT website for the trigeminal neuralgia association (which also has alot of valuable info on t. neuropathy like you have). They lead me to a surgeon who performed a MVD and got rid of the pain...on that side. I still have a touch of neuropathy though in teeth. I'm so sorry. If I can be of help, please feel free to email me at jeanienewell@bellsouth.net. I know the pain from an attack is something that can literally bring you to your knees. They are having alot of success with some new drugs out there. I couldn't tolerate the cymbalta so I see a pain specialist and we've found one that works through trial and error. Even though there is no cure, there are things that can be done...even with neuropathy.
Good luck....let me know if I can help...and check out the trigeminal neuralgia assn website. You'll be amazed at how helpful they can be.
Hi, I had a traumatic injury (dental surgery which led to a horrific infection, osteomyelitis of the mandible) which is now trigeminal neuroPATHY... the ONLY thing that has worked for me (and i've done it all, pain meds, anti-depressant meds (including cymbalta), even had a stimlator implanted in my face) all to no avail. I have been getting botox injections directly into the sites of pain and along the trigeminal nerve. It has brought my pain level down from a 9 to a 2!!! i would NOT be here without them. That said, before I went they were talking about brain surgery and implanting a stimulator there... that's when I said.. but Botox works for migraines .. there is a 50/50 chance it will work and you need a TOP NEUROLOGIST who specializes in facial pain -- I am lucky, finally to be on the good 50%. Hope this helps somebody!
i meant to sat maxilla, not mandible ;)
I also have been diagnosed with trigeminal neuropathy. I have pain in my eye, cheek and jaw constanly the cold makes it worse. I am now afraid to go out side. eating really cold food makes it worse and talking alot makes it just ache terribly. I am on Cymbalta, lyrica 200 three times a day, and tegretol 600 two time a day, and ativan for anxiety as needed. and two days a week I get to have pain holidays and take vicoden. This is a new doc I am working with we are trying to find the right combo for me I also work but right now I am off work and also worry about how this will work. I am a RN and would not want me taking care of anyone in my family. I am slow, and tingly all over. I do think that the increase in lyrica and tegretol have helped. My doc did a rescue on me the other day shot licocaine in my face. You need to find a doc that is familar with facial pain. Keep in touch
I, too, had it for 7 yrs! It finally went away. This waswhen they had no meds for it.Constant pain in my teeth for 7 yrs! I had two root canals to no avail.Now I have 6 caps across the front and my bottom teeth, once straight are now hopelessly crooked from lack of use. I feel for you.
pepper, i am SO happy to hear that you are pain free! this is wonderful and amazing news. I am dancing for you, as singing hurts ;) How did you get trigeminal neuropathy - or was it neuralgia? My doctors have been telling me that 5-7 years from the dental injury and infection that it will probably go away, it's been 6 + years and it doesn't feel as if it is going away anytime soon. I had corrective restoration of my upper teeth as I had to have 1 extracted due to the osteomyelitis when they took some of my jaw bone, since then i needed 8 root canals. 2 are not healing so i went to see a top endo and he said they will heal within 2 years. I am SO tired of the TIME i feel i am losing. CONGRATS to you, Pepper! Do tell more about how you got it and how it went away.. it is so encouraging!
prayers for all of you,
facepain and face.your.pain
Hello, I just joined and would like to add to this discussion. I have had Trigeminal Neuropath now for over 5 years. I had a history of bad sinus infections and some minor symptoms of the neuropathy (stabbing pain, numbness, and aching), which I thought was from the infections, and I ignored them. Then after a rathe hard and long business trip, the right side of my face became numb and I had a stabbing pain and it felt like something was trying to drill its way out of my right forehead. This continued for about 2 weeks, and I took a few days sick leave to see if it got better. It got worse! On a Sunday night it was so bad I couldn't sleep at all. The next day I tried to go to work, but the pain was the worst pain I had ever had. I ended up sitting in my recliner and all I could do was rock back and forward and curl up as much as I could. I could not escape the pain!!! My wife got scared and called an ambulance. In the emergency room they took one look at me and started me on an IV of pain medication. It took 5 hours of them pumping pain killers into me, before the pain got down to a 7 on the pain scale. They could give me no more pain killers, because it would affect my breathing! After that I consulted my normal doctor, then I don't know how many neurologist! I have tried almost every medicine available for this condition, with no help, except for opioids. I started on a fentynal patch and endured many days of throwing up as the dosage was increased, until it was a 100 mg patch. I tried trigger point injections, I had the trigeminal nerve base injected (verry painful,as they go in from the right jaw close to the ear, and you have to be awake), no help at all, I was going to try gamma knife, but because my pain is atypical, they wouldn't do it. I am on Long term disability, and I am on full Social Security disability. I became alergic to the patches, so now I take Morphine 100 mg 3 times a day. This lets me live at a 7 on the pain scale and still be able to function to a certain degree. Early this year I had the good fortune to be sent to a Pain Control class and one on one sessions with a doctor that taught me a ton of relaxation techniques and exercises which has helped me control my other disabilitys pain, so I am functioning at a higher level , I still have the Neuropathy pain at a 7, but the other pain is greatly reduced. I have also taken up several different arts and crafts. Working on these projects I can focus intently and drown out the outer world, and lets me block my pain a tiny bit more. Every bit of pain control is well worth it. I also attend a Chronic Pain group at my local V.A hospital. We discuss our situations, provide moral support, and help each other by talking about what pain control techniques work for us. We are led by a Mental Health Doctor who specializes in chronic pain. Each week he coves a new technique or we go over previous information to keep it fresh in our minds. If you have access to Pain Control specialist, I highly recommend giving it a chance. I in the past have also had Accupunture and Accupreasure. Unfortunately I was not able to continue do to the cost, and it is not coverred with my V.A. or Medicare. The only time I was pain free for more than 30 minutes was at one accupuncture session. It was not reproduced in tries afte that! I do not know where I would be without the pain control doctors, the control techniques, arts/crafts and the most important support of my fantastic wife. I feel I have been blessed to have so much support all around me. Please send an email if you think the things I have learned may help you!!!
Has anyone had Botox injections to reduce pain for thier Trigeminal Neropathy? Please let me know, we are at the end of our rope.
Kerry, I get botox injections -- read up to my posts above. they saved my life! it works!! but, you MUST see a top neurologist - they MUST know where the trigeminal nerve sites and I wish you the best of luck! Your doctor will need to write a letter to your insurance company that it is deemed medically necessary since they consider it experimental.. duh! the experiment worked with me! -- i was about to end everything because the pain was a 9 -- it is now a 2 and there are days i don't have any.. well, for moments. They wanted me to go for brain surgery and I said ya think I can try botox first! I wish you the best.. hang on to your rope.. it takes a bit for the injections to work and the more you go the better it gets (can ONLY get injections every 90 days or you can build immunobodies to it and it won't work any longer) - it takes 16-20 days from day of injections for them to start to work and only lasts 60 days.. BUT for me it starts to work within 6 days after injections and lasts up to 70-80 days. It's a MIRACLE! please please keep me/us posted. It is NOT Trigeminal Neuralgia.. it is NEUROPATHY -- 2 entirely different disorders... though the manifest and feel the same. HUGS!
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